Following the recent conference on International Perspectives on Evaluation of Patient & Public Involvement in Research held at the University of Newcastle on 15th and 16th November (live stream available here) there were a lot of interesting posts and threads on Twitter (#intppieval18). These included some on how patient and public involvement and the people… Read More Have you ever been miss-sold PPI? Why it matters how we refer to public involvement

This post builds on my previous one about public involvement and ethical review. It follows the publication in April 2018 of new guidance by the Health Research Authority (HRA) to help applicants for ethical review better identify and report where they have involved the public in their research applications and the difference that made. The… Read More Public involvement and ethical review [part 2]: Why it matters that public involvement is linked to ethical review to improve research

Most if not all patients, service users or carers, as in my case, get involved in health and social care services or research because of their own personal experience, often termed ‘lived experience’, of a health or social care condition or problem. We give many different reasons for getting involved but probably the commonest is… Read More A poignant reminder of why we do what we do and why it matters

The publication of the National Standards for Public Involvement and the piloting of them as ten “official” Test Beds along with an unspecified number of “freestyle” sites has been a long time coming but the moment is both opportune and, perhaps, auspicious. I think they will matter a great deal in helping to spread public… Read More Defining what good public involvement looks like: why the National Standards for Public Involvement matter

The simple answer to the question, to the surprise of many perhaps, is relatively little. Or to put it another way, many of the benefits that involving the public bring to research address important aspects of the ethical review of research. Both are about making sure that research on people (or their data or samples)… Read More Involvement and ethical review: what’s the difference? Making involvement relevant and useful to ethical review

Welcome to my blog Involvement Matters. For this, my first post, I will set out my stall, so to speak. I decided on the name for the blog a long time ago for what seemed like obvious reasons. I want to write about matters pertaining to the involvement of the public (my preferred shorthand and… Read More Setting out my stall: it is the difference involvement makes that matters